The LLS Blog

My Journey Through Stage IV Non-Hodgkin Lymphoma

By Brittany Daniel | October, 2017

By Brittany Daniel

Brittany Daniel is an actress best known for her role in the television series “Sweet Valley High” and the film, “Joe Dirt,” and a lifestyle blogger at The Sweet Life By Brittany + Cynthia Daniel. She and her husband, Adam, will participate in The Leukemia Cup Regatta in San Francisco (www.sflcr.org) on October 22.​

In the summer of 2011 life was pretty perfect for me. I was 36 years old, happily getting ready to move into a new house, and gearing up to begin production on my television show. That’s when I suddenly started experiencing flu-like symptoms, back pain and night sweats. I went to the doctor not knowing exactly what was wrong. After a few tests, they diagnosed me with stage IV non-Hodgkin lymphoma. My entire life stopped in an instant.

I started chemotherapy and R-CHOP immediately, and with the support of my physician — and my amazing family — I began my journey to beat cancer. I spent the next 100 days in and out of the hospital. In those 100 days, I learned what it really means to fight for your life. I went through chemo. I lost 30 pounds and all of my hair. I was on a feeding tube. And, I suffered many life-threatening infections. I remember there were days when I looked in the mirror and I did not recognize the frail, bald woman looking back at me. In just over three months, I had gone from being carefree to being someone who required a caregiver. 

I know that all of the other incredible medical treatments that I was fortunate enough to have access to played a gigantic part in me beating cancer. Equally important was the support of my family and friends. Sharing fruit punch popsicles daily on the front porch of my sister’s house with my then 3 and 7-year-old nephews likely played an equally important role in why I am here today.

I also knew that I had to keep moving my body. Even though I was fighting for my life, I had to push just a little bit harder. I would go for walks around the hospital floor at least three times every day. I would even wake my mom up in the middle of the night to go walk the hospital floors with me. Once I was well enough to be at home, I would go on walks with my mom, sister and nephews every day.

I kept setting larger goals for myself. There was a hill near my sister’s house, and every day I would walk a little bit further knowing that one day I would get up that hill. My commitment to physical activity never stopped. Once I was in remission, I started going to gentle yoga classes to slowly rebuild my inner and outer strength. That was one of the best gifts I gave myself. It helped me reconnect with myself in a whole new way. 

Beating cancer takes an unbelievable toll on you both mentally and physically. My body and mind were in constant survival mode. I experienced some depression, which is very normal for someone fighting cancer. Yoga and meditation really helped me reconnect with my body and spirit. It helped me process what had just happened to me and work through all of my feelings. I highly recommend gentle yoga and meditation during and after treatment. I also explored alternative medicines like acupuncture and Chinese medicine, both were a huge help in restoring my body once I was done with chemo. 

Early on in my cancer journey I understood that this was going to be a physical and mental fight. How I thought about my fight with cancer was going to be just as important as my physical fight. I had a vision board that I kept in my room during my treatment to remind me of all the things I loved, and what I was fighting for.

I filled the board with images that represented what I envisioned for myself when I survived cancer. I had pictures of my family, of a woman walking on the beach in Hawaii, and one of a couple getting married. My vision board represented hope and a beautiful future. It kept me motivated and focused on all of the wonderful things that life still had to offer.

I also subscribed to the old adage that laughter is the best medicine. Comedy became such an amazing outlet and relief for me while I was going through treatment. My favorite memories with my family during treatment were watching rerun episodes of "Seinfeld" and "Everybody Loves Raymond." Daily laughter was so therapeutic and healing to my spirit, and it really helped me take my mind off of all the heaviness around me.

I never gave up, even when I was scared. I think that was because of the will my dad instilled in me. I come from a family of fighters. We believe anything is possible once you set your mind on it and we are willing to work hard to achieve it. My father passed away from cancer in 2009, and his courage inspired me every single day.

Six years later, thanks to the advanced treatments I received, I am so blessed to be able to say that I am in remission, and that life gets better and better every single day.

Meeting my husband Adam was a dream come true. When I was sick I remember thinking, "I will survive this, and I will marry an amazing man one day." Not only did I survive cancer, but I met and married a strong, kind, smart and compassionate man. I have to say, my life looks a lot like that vision board that I assembled in my hospital room. We even celebrated our honeymoon on the beaches of Hawaii.

If I can offer any piece of advice to other cancer patients going through what I went through, it would be for them to know that this is the scariest ride of your life. It’s going to be terrifying and sad, but survival is possible. You can get through this and go on to have a beautiful life. Please just hold on and fight with absolutely every ounce of your mind, body and soul.

Adam and I are so thrilled to be participating and raising money for the Pacific Union Leukemia Cup Regatta the year. Adam is a real estate broker at Pacific Union, and he is proud to be able to involve his brokerage in the cause as well. This is a cause that means so much to us, and I am so excited to be involved with The Leukemia & Lymphoma Society (LLS) so we can help fund lifesaving research, which is one of the reasons I am here today.

To learn more, visit Brittany's blog at www.brittanyandcynthiadaniel.com.

Revolutionary Cancer Immunotherapy Saved 7-Year-Old Kaitlyn’s Life

By Sandra Salviejo | October, 2017

​Kaitlyn Johnson is a full-of-life seven year old – she has tons of energy, breaks out in dance moves whenever any song comes on, loves to get her nails and hair made up, and keeps up with what is trendy and cool.

For the past three years, she has pursued her dream of being a Texas cheerleader. Mandy, her mom, is the cheer coach of Kaitlyn’s team of more than 30 young girls.

While Kaitlyn spends her time cheering, dancing, and building friendships, she has also had to have some pretty serious conversations with her friends at such a young age.

Kaitlyn has had to deal with cancer for the majority of her young life. In fact, she was only 18 months old when she was diagnosed with acute lymphoblastic leukemia (ALL), the most common cancer among children and young adults.

Her young life was quickly consumed with cancer treatments, doctors’ visits, and hospital stays. Throughout this time, Kaitlyn was brave, positive and continued to pursue her passion for dancing – no matter the location.

When she was first diagnosed, her parents, Mandy and James, made a decision that they would make this situation as positive as it could be. The family dressed up together before going to the hospital, made friends with all the people who they trusted with her care, and found small ways to make each moment positive.

Kaitlyn’s perspective is incredibly unique. A hospital visit is not feared, but it is a place where she can say hello to all her friends – from her friends who are patients, other families, nurses, doctors, security guards, to her therapy dog.

 “As a parent, if your child is scared you want to be who they reach to. You’re conditioned to think that you’re the brave one,” said James. “But, when your kid touches your hand in that moment of fear and comforts you, you realize that they are the reason you’re strong.”

Unfortunately, after three years of chemotherapy, the treatment was not working. Mandy and James had long discussions with Kaitlyn’s doctor who suggested that they enroll Kaitlyn in a clinical trial for a new immunotherapy.

The revolutionary treatment, called CAR T-cell immunotherapy, had showed promise for other young children like Kaitlyn. The process was extremely unique and innovative – the doctors would remove Kaitlyn’s T-cells, the soldiers of her immune system, and reengineer them so that they could fight her cancer.

In February 2015, when Kaitlyn was four years old, the family traveled from their home in Royse City, Texas, to Philadelphia, Pennsylvania. They traveled almost 1,500 miles to the Children’s Hospital of Philadelphia (CHOP) where she was treated.

The family stayed in Philadelphia for a total of eight weeks while she received two separate infusions and recovered. Miraculously, it worked. The cancer cells were gone.

Their local community has come together to support the family. Lake Point Advisory Group, LLC, a financial advisory firm based in their home state, raised $630,000 in her honor, and are dedicating the funds in Kaitlin’s name to a Specialized Center of Research (SCOR) grant from The Leukemia & Lymphoma Society (LLS) that has been supporting a world-class science team that pioneered the research that saved her life.

In fact, LLS has invested $20 million over twenty years to support the research team at University of Pennsylvania and Children’s Hospital of Philadelphia who developed this therapy. LLS has invested $20 million more in CAR T-cell therapies at other institutions. This significant investment has paid off. On August 30, 2017, the U.S. Food and Drug Administration approved the CAR-T immunotherapy for patients like Kaitlyn who have ran out of other treatment options.

Today, Kaitlyn continues to live her life as a typical second grader. Every six months, she visits her doctors in Dallas and Philadelphia. Their last trip, which involved a lab test and blood pressure checkup, was twelve hours long. “We fly across the country for these visits, but if that’s what it takes for us, I’d do it twice a week,” says James.

On September 22, Lake Point Advisory Group formally honored the Johnson family with the dedication of the grant in Kaitlyn’s name, recognizing LLS’s ongoing commitment to fund research that will save the lives of other children like Kaitlyn.

James gives the following advice for those families who may face similar situations. “As humans we are amazing at the amount of stress and heartache that we can handle. My advice would be to really let your guard down and rely on your support system – ask for help.” 

I Lost My Husband to Myeloma, A Blood Cancer

By Kimberly Alexander | September, 2017

September is Blood Cancer Awareness Month and The Leukemia & Lymphoma Society (LLS) is increasing awareness about the urgency to find cures for blood cancers – the third most common cancer killer in the U.S. Throughout the month, our blog series will focus on the three main types of blood cancers: leukemia, lymphoma and myeloma.

When Elijah was diagnosed with multiple myeloma in 2005, shortly after retiring from the Oakland Raiders, we were stunned. Neither of us had ever heard of it. 

I searched online from his hospital room and what I read made no sense. How could my 35-year-old husband, who still looked like he could run out on to a football field in his pads and helmet, have a terminal blood cancer?  

Life with multiple myeloma became an instant roller coaster. As his caregiver I knew it was my job to learn as much as possible about what we were facing, while trying to keep things normal for our two young sons. 

He fought a good fight and stayed positive throughout his treatment. He epitomized living with cancer.

We lost him suddenly in 2010 and it was devastating. I held it together because I knew our boys needed me.

Even though I had to figure out how to navigate life without Elijah, one thing I knew for sure was that I wanted to stay connected with the multiple myeloma community to raise awareness, to help find a cure.

The advancements that have been made since I first learned of multiple myeloma have been incredible. I share our story as one of hope for those living with it now. New treatments options are promising and my fingers are crossed that they will lead to a cure, but I know continued research is critical.

The Leukemia & Lymphoma Society was a great resource for us during my husband’s treatment, and because of their mission, getting involved with the organization just felt right.   

Now that our sons are adults, the oldest is in college and the youngest plays baseball in the New York Yankees minor league system, I can focus even more of my efforts on educating others about multiple myeloma. 

This is my way of keeping Elijah’s memory alive. It’s the least I could do.

Kimberly Alexander is the owner of KimCONNECTS, based in Dallas, Texas.  She spends her time traveling the country speaking on issues related to multiple myeloma and co-hosts a radio show.  She can be reached at: kim@kimconnects.com.

DID YOU KNOW?

1) Myeloma is a cancer of the plasma cells, a type of white blood cell.
2) Black Americans are twice as likely as white Americans to be diagnosed.
3) 110,345 people are living with or in remission from myeloma in the U.S.
4) 30,280 new cases are expected to be diagnosed in 2017.
5) Most people diagnosed are older than 50 years old.

For more information about myeloma, visit: www.lls.org/myeloma